Highest Rated Treatments on HealClick

Here are the highest rated treatments for ME/CFS with 9+ ratings, pulled from 1600+ ratings on our site so far. If you find that this list matches or doesn't match your experiences, the best way to put in your “vote” is to Visit us at HealClick and rate your treatments!

I saw this awhile ago and for me, who's been sick for over 19 yrs and mostly housebound, most of it pretty much crap. The only thing that has ever helped me over 19 yrs is Acylcovir and maybe LDN (I just started it).

I saw this awhile ago and for me, who's been sick for over 19 yrs and mostly housebound, most of it pretty much crap. The only thing that has ever helped me over 19 yrs is Acylcovir and maybe LDN (I just started it).

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I just published this list for the first time today. This list is specific to ME/CFS, and not the "overall" list published last week. This list is generated entirely from our database of ~900 ME/CFS patients, not commentary from me. LDN has a 3.3 / 5 rating with 27 reviews, and Acyclovir has a high rating of 4.3 but the sample size is only 3. As you can see, valtrex and valcyte are both high up on this list, so not sure this list disagrees with your experience there?

I'm using or have successfully used 8 of these treatments but I'm still nonfunctioning.

I'm not sure describing these as treatments is going to help pwcs.
For the most part, I see these as symptom management. If that's the objective, I'd add being supine as often as possible to the list.

I'm not up on several of the meds listed. Are they considered "cures" for some ?

tx .. x

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Patients rate on a 1-5 scale (from much worse to much better). Our goal was not just to review treatments but to see how treatment ratings correlate to changes in patients' conditions. I think it'd be a good idea to add a way to indicate a treatment led to recovery, instead of just symptom management as you mentioned.

This list is a survey of personal experiences, not theories (on causation or best treatments for the population)

At this point we have slightly more reviews for valcyte than for avoidance, so we're not shutting anyone out or up.

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I'd think that all patient surveys are going to be influenced by the composition of the group--in this case Healclick members. It seems like, as every group will attract different patient populations, this would be hard to control for. I wish there were a way to get around this, but I don't see how it could be done.

I'd think that all patient surveys are going to be influenced by the composition of the group--in this case Healclick members. It seems like, as every group will attract different patient populations, this would be hard to control for. I wish there were a way to get around this, but I don't see how it could be done.

Sushi

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The only way to get away from this problem is larger sample sizes. But based on these sample sizes so far, we are not skewed toward any one treatment, mold avoidance or otherwise. It's pretty well balanced if you look at the #'s closely.

I'd think that all patient surveys are going to be influenced by the composition of the group--in this case Healclick members. It seems like, as every group will attract different patient populations, this would be hard to control for. I wish there were a way to get around this, but I don't see how it could be done.

Sushi

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And then there's the fact that there is no way to know whether the people participating have the illness they claim. It doesn't take much for a group of people (with or without the illness) who have a vested interest in some treatment to load the "effective treatments" in that direction. As mojoey says, the more people who participate, the less a relatively small group can influence the results. Still, with so much misdiagnosis in ME/CFS, I'm not sure we can be overly confident in the rankings of treatments. The top ranked treatments might be the most effective for people who think they have CFS, but could easily apply more to people with chronic fatigue than ME/CFS.

That said, as long as we all understand the limits of this kind of "data" collection, we might find ways to make this useful.

And then there's the fact that there is no way to know whether the people participating have the illness they claim. It doesn't take much for a group of people (with or without the illness) who have a vested interest in some treatment to load the "effective treatments" in that direction. As mojoey says, the more people who participate, the less a relatively small group can influence the results. Still, with so much misdiagnosis in ME/CFS, I'm not sure we can be overly confident in the rankings of treatments. The top ranked treatments might be the most effective for people who think they have CFS, but could easily apply more to people with chronic fatigue than ME/CFS.

That said, as long as we all understand the limits of this kind of "data" collection, we might find ways to make this useful.

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I agree, and that goes for any forum. It goes for the crowdsourced document I put together on gcmaf, and the PR surveys on methylation protocol. It's all limited, and the only ways to get results that get closer to reality are better disease definitions and larger sample sizes.

As long as we stay keen of the limitations (as you suggested), these results might be used as a launchpad to do more research and read the treatment reviews more closely. This is the aggregate data, but a lot of our users are leaving detailed reviews that give these numbers much needed context.

I'm using or have successfully used 8 of these treatments but I'm still nonfunctioning.

I'm not sure describing these as treatments is going to help pwcs.
For the most part, I see these as symptom management. If that's the objective, I'd add being supine as often as possible to the list.

I'm not up on several of the meds listed. Are they considered "cures" for some ?

tx .. x

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I agree that many of the 'treatments' listed above are symptom management and not treatment. Meditation, pacing, diets are no treatments and no cure. 99% of the patients using these modalities are still here. This should be a strong indicator that these are no treatments but mere ways of coping.

i don't want to assume that we got a retrovirus, but HIV patients do not see their viral load reduced from diet, meditation and wishful thinking.

We so need serious research.

i am not sure that being 'matched' to other patients would help me to be honest. I am not one to like being given recommendations of herbs, supplements, diets, meditation and other self help stuff. I hate being told 'you know it could be Lyme'. What I know I need is medical care.

I agree that many of the 'treatments' listed above are symptom management and not treatment. Meditation, pacing, diets are no treatments and no cure. 99% of the patients using these modalities are still here. This should be a strong indicator that these are no treatments but mere ways of coping.

i don't want to assume that we got a retrovirus, but HIV patients do not see their viral load reduced from diet, meditation and wishful thinking.

We so need serious research.

i am not sure that being 'matched' to other patients would help me to be honest. I am not one to like being given recommendations of herbs, supplements, diets, meditation and other self help stuff. I hate being told 'you know it could be Lyme'. What I know I need is medical care.

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I agree, effective medical care that gives me back substantial functionality, if not a cure!

I agree that many of the 'treatments' listed above are symptom management and not treatment. Meditation, pacing, diets are no treatments and no cure. 99% of the patients using these modalities are still here. This should be a strong indicator that these are no treatments but mere ways of coping.

i don't want to assume that we got a retrovirus, but HIV patients do not see their viral load reduced from diet, meditation and wishful thinking.

We so need serious research.

i am not sure that being 'matched' to other patients would help me to be honest. I am not one to like being given recommendations of herbs, supplements, diets, meditation and other self help stuff. I hate being told 'you know it could be Lyme'. What I know I need is medical care.

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Hi Kati,

Thanks so much for the honest feedback. For the record, I don't look at any of these treatments as a cure, and suggesting that there was a cure on that list was never my intention for posting about it.

And we are in agreement that the biggest need is serious research. Whether you find the sharing-with-each-other part beneficial (many of our users do but I understand it's not for everyone, especially if you believe strongly in one theory), everything our users share about their symptoms, well-being, treatments, maybe even labs (soon) may be anonymized and used for patient-reported outcomes studies.

I am talking with researchers now to try to get a study off the ground.